Table 2:

Barriers to ACP/Reasons Why ACP Not Necessary

Barrier	Representative Quotation(s)
Lack of knowledge of dementia trajectory	Interviewer: For people who do have dementia, what sorts of medical problems they develop as the dementia gets worse, has that come up? Caregiver #1 : I’ve never heard that. Caregiver #2: No. Interviewer: For example, many people with dementia, eventually, develop trouble swallowing. Has that come up? Caregiver #1: I’ve never heard that.
Understanding of physical health as separate from cognitive health.	Caregiver: He is very healthy. He’s physically very able. He’s still very strong. He’s deteriorated some. I would say his balance isn’t what it used to be, but he still works out three mornings a week at a workout place. Patient: I’ll be 74 next month. I think I’m physically strong because I make an effort to be so. I still climb a mountain on my birthday.
Need to live in the moment to avoid acknowledging certainty of future impairment	Caregiver: When you’re in this position, when you’re the one who has the Alzheimer’s, you try to live from day to day the best you can. You don’t want to be looking down a road that I’m going to turn into this helpless thing, because if you start thinking about that, that’s very debilitating. Caregiver: I’m not sure what we would do if he needed more care. I’m hoping he won’t need more care. That we’ll be able to be together for a long time. Caregiver: I know she would probably share that, it’s just talking about the fact that it’s going come to that, that is upsetting. Patient: I don’t know what it’ll be like next year or whatever. I just try to keep focused on the good things that I have. That probably sees me through in difficult times.
No need because patient will not be aware	Patient: I thought about it somewhat, and I’ve come to the conclusion that I really don’t care. Interviewer :You don’t care what kind of decision they make? Patient: If I’m incapable of making’ it, I got no say in it anyway.
Patient does not want to upset family	Interviewer: Have you talked to your family about what your wishes would be if you couldn’t express them? Patient: No. I have not. I don’t think it’s because I don’t want to go there for myself. I don’t want to go there for them. They all have children that are from ages 2 to 16 and they have everything to look forward to. I try not to make them worry or to think about—I’m just so grateful.
Expectation that involved family will take care of issues as they arise	Caregiver: We have five children. I have a daughter she’s very close to, and we have four sons. I would say two of them are—my daughter and two of my sons are very close by. They’re all aware, and they’re all very concerned and committed to taking care of her if it becomes necessary in doing whatever has to be done. While we don’t know exactly what is going to transpire, we have some comfort in the fact that everybody is on board.